Alicia at UCSF's Comprehensive Cancer Center as her nurse Anja Manishin (cq) weighs her. and they laugh that she has ganed two pounds after eating lunch.
Alicia Parlette is going through another round of chemotherapy.
FRIDAY, JANUARY 26, 2007 KURT ROGERS/THE CHRONICLE SAN FRANCISCO THE CHRONICLE
SFC ALICIA_0096_kr.jpg MANDATORY CREDIT FOR PHOTOG AND SF CHRONICLE / -MAGS OUT

Photo: KURT ROGERS/THE CHRONICLE

Alicia at UCSF's Comprehensive Cancer Center as her nurse Anja...

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Anja Manishin (right) inserts a needle into the back of Alicia Parlette's hand. An I.V. with her chemotherapy drug will be started and take about an hour to be fully absorbrd by her body. Kate Ferrogaiaro (cq) a life long friend of Alica's holds her hand.
Alicia Parlette is going through another round of chemotherapy.
FRIDAY, JANUARY 26, 2007 KURT ROGERS/THE CHRONICLE SAN FRANCISCO THE CHRONICLE
SFC ALICIA_0047_kr.jpg MANDATORY CREDIT FOR PHOTOG AND SF CHRONICLE / -MAGS OUT

I started this piece by thinking about the ways cancer patients -- especially youngish, single ones like me -- could be supported once it became clear that their cancers would be long-term, chronic and continuously life changing.

I'm not talking about the Lifetime Television kind of support, where friends storm the apartment the moment they "hear the news," bringing candles to symbolize the light their now-sick friend brings to all their lives.

I'm talking about needing support, say, almost two years down the road, when nothing especially dramatic is happening and the plan of "attack" is still to hold rock steady, and everyone already knows that you're really tired and you're in pain, so there doesn't seem to be any point in bringing any of it up. But it doesn't change the fact that you're feeling it. Every. Single. Day.

What kind of support do patients need then? And how can they get it?

I turned 25 on Jan. 11, and while I'm thankful I get to see this age -- I had my doubts -- I'm disappointed about how the year is starting out: I live in the upstairs bedroom at my surrogate parents' house, with my surrogate mom as a built-in dog-sitter, and wild nights consisting of the three of us eating takeout in front of the TV. And me starting to like it.

Whoa. Top of the list: moving out. But I can't do it alone. I can't even do it with help packing a few boxes. To live healthfully, I think I need to find a situation in which I have some constant, built-in help. Translation: I don't think I can live on my own.

That's no pint-size favor. And other than my surrogate mother, Sally, who has already opened her house and her family and her heart to me and my doggie, I don't know who I would ever be able to ask. Or how.

That's just one of many favors that cancer patients are forced to ask, over and over, if cancer doesn't cease or destroy in a timely fashion. What of other big ones, like being taken to the hospital or fed when you can't do it yourself?

I looked for Bay Area resources -- city, state, nonprofit, even private -- that help someone with a chronic illness live independently. There were many private groups that offered this for seniors, and some nonprofits that had independent housing for HIV/AIDS patients. Many Jewish community centers offer support groups and contact to other community services for people with chronic illness, but that was as close as I got.

I think the answer lies somewhere smaller. Like through a woman named Mary Isham, in Bernal Heights.

Seventeen years ago, a good friend of Mary's, a nurse, was told she had cancer. She asked several friends, including Mary, to be on her "team": a group of friends convened to help with her life. This friend told her teammates about her physical, emotional, social and familial needs, and sometimes they weren't small ones: She asked Mary to take care of her son after she died. And Mary did.

So when Mary was diagnosed with pancreatic islet cell carcinoma eight years ago, she quickly formed a team, too.

The teammates were the ones who found a doctor to perform a difficult surgery. They formed late-night phone brigades for Mary's rough times. They set up a food committee so that, with one phone call, she could have food for three or four days. They took turns going to her appointments, researching studies and treatments, and sitting with her.

"The whole HIV community modeled teams, and that reinforced that idea for me," Mary said.

That's what I'm talking about. People who know you, love you -- maybe just want to help you -- and are organized to do that. And not just for the first couple of weeks.

The group started out primarily as friends who also had careers in medicine, as Mary did as a registered nurse. But it evolved and changed, until some of the teammates were people Mary didn't know well, but who were able to give to her, and she was thankful to receive.

"It's amazing how someone else will just show up," Mary said.

Mary still needs her team, though not as often or as intensely. In the beginning, they had monthly meetings, led by Mary; now they meet as needed.

Mary spends much of her time helping other cancer patients form teams. "It's hard for most people to ask for help," she said. "I coach them around that."

I often don't know what I need, so how can I ask for it? Mary tells people to think about the things they can't do for themselves, the things they need the most help with. Then write them down and pick out the top three.

"Most people need help around advocacy and their illness," Mary said. "They need somebody to go with them and talk in the doctor's office."

For me -- and I'm guessing for many people with pain and fatigue -- the biggest concerns surround the day-to-day stuff, not necessarily the dramatic moments. For example, my dad will come out from Roseville (Placer County) to go to my big appointments, but he's not going to come out to organize my bills and do my laundry. (Not that he wouldn't, but it would be pretty ridiculous.)

But that's the kind of stuff that makes me feel defeated and undone and so, so tired. That's the kind of stuff that, were someone to ask about a weight he could take off my shoulders, I would secretly ache to mention.

But I wouldn't. That's my responsibility, I know. It just gets so tiring, being needy all the time.

That's the beauty of the team. These people have signed up for those needs, so it doesn't leave the patient constantly asking for help. According to Mary, after identifying the top three needs, patients can then ask friends whether they would be able to be a part of the team. The key is honesty, from everyone.

As in the proverb, it also takes a village to sustain a child once she's grown, especially if she's a single gal trying to live in her own apartment and do many, many rounds with a rough disease. Mary's team makes me think of a makeshift family of sorts, but more focused, brought together because they love that one person enough to stay up late and go grocery shopping longer and do extra laundry and shed someone else's tears and feel pain that wasn't meant for them.